How the World Changed in a Month

Roughly a month ago I restarted my cleanse diet. I didn’t have the miraculous return to health like the first time I tried it, as I established in the last post. I did, however, have a few weird and disappointing discoveries.

After abstaining for a while, I decided to have a bit of coffee. I rely on caffeine to get through a day awake, and I don’t have a problem with the caffeine in tea, so I thought this would be no big deal. I had a cup of an unidentified flavored coffee in my fridge, and it gave me a stomach ache. I gave it a few days, then tried again with organic, plain coffee and seemed to not react. I added cocoa powder (soy and corn free) and had the stomach aches like I had with gluten. I tried chocolate almond milk (again, soy and corn free) and had the same bad reaction. A friend suggested I try raw cocoa nibs, and again, the same. So far, I know I have a problem with cocoa and possibly coffee (unlikely, but still possible. I should test more once I am completely healed). On the bright side, I told this to the acupuncturist, and she did a treatment that should correct that problem. I have to wait until my gut has completely healed to try again, so we’ll just see.

I added rice and potatoes back, too, and the jury’s out as to whether they are a problem. These, too, will be retested after abstaining for awhile. How does a person get so many devastating food allergies/intolerances?

Near the end of the cleanse, something even weirder happened. I woke up one morning and, while putting in my contacts, noticed that the whites of my eyes had turned yellow. I went to a doctor and she confirmed that my eyes were still yellow. She ran blood tests to check liver function, and since I hadn’t had a thyroid panel in a long time, ran that, too.

I was able to follow-up with my regular Nurse Practitioner, C, a week later. “Your tests are perfectly normal,” she tells me. “Every value you have is in the center of the range. Good job with the self-regulation of your thyroid hormone dosage, by the way – that’s perfectly in the center of the range, too.” I should point out, if I haven’t already, that C told me to dose my thyroid meds based on my heart symptoms rather than worrying about the lab values. Better to be hypothyroid than in heart failure as far as I’m concerned.

She then asked, “Were you vaccinated for Hepatitis B?” I told her I was, right before college. “Well, that’s odd – you have no antibodies, no immunity to Hepatitis B. I think you’re a non-responder as far as vaccines are concerned.” Makes sense – I’ve contracted diseases I’ve been vaccinated against (like pertussis) or already contracted and should have subsequent immunity to (like chicken pox – I got it twice). This explains a lot, though. My immune system is perfectly happy to attack tissues that belong in my body, but send in a foreign body and the immune system fails to respond. This, to me, is clear proof that something is wrong with my immune system. More confirmation for the ME/CFS diagnosis.

A few days later, I started to feel ill, My lymph nodes swelled up, I got a little congested… I (foolishly) thought I just caught a cold. Heh. I wish. It turned into the full-on flu. I suffered from that for most of a week, and have spent the last week recovering. The acupuncturist offered her theory about the situation. She said that maybe the jaundice was the first sign of the flu. Maybe it got stuck in the most vulnerable organ I had and then replicated there. I could buy that. Nothing about me is normal.

Luckily, I recovered in time to attend a conference on autoimmune disease at a local hospital today. I will devote a full post to that in the future (I’m no longer going to try to predict when, as my illnesses keep getting in the way). I am glad I made it to that conference – it seems that the research is going in the right direction.

In the midst of all this, I made a career move. Dr B has been telling me that I should get into patient advocacy. He thinks that I have some really good life experience, and I have a lot to add to that field. After dealing with a situation in which a friend was being bullied into seeing what other people thought was “the right doctor” for her condition, I realized Dr B was right. I have had to deal with so many health care choices, doctors who don’t listen (or are just plain wrong), other people who think they have THE answer, and other trials and tribulations of being chronically and mysteriously ill that I have a special insight into the whole process. An insight that I can use to help others get what they want and need out of health care.

I looked up information on how to become a patient advocate and learned that really, there is no process. You can just decide to do the job. There are no certifications or degree programs. There are classes and certificate programs, but they don’t actually certify you to do anything – they’re just educational. I might take some of those classes at some point (especially the HIPAA classes), but yeah, I’m ready now.

My plan is to make educational material and do talks about how to get what you want out of health care. Medicine is an uncertain science, and there is rarely only one right way to treat yourself, especially with a chronic condition. I want to point out that patients have rights to refuse treatment if they so choose. I want people to realize the doctor works for them, and that if he/she isn’t working out, they don’t have to stay with that particular practitioner. I want to teach people how to take control of the situation by doing their own research and getting a doctor to listen. I want people to understand that they, not the doctor, make the healing happen. I want them to really think about how they want to care for their health (i.e. natural vs. pharmaceutical, preventative vs. reactive) and go get that. So, I’ve started by attending the autoimmune diseases conference. I’ve also got a nebulous outline for my first talk.

I’ve already had to put my patient advocacy skills to work with our fluffy friend, Duck. For the last few years, Duck has been plagued with diarrhea. I could usually make it go away with lots of probiotics, but this time, it stopped working. I took Duck into the vet and learned he lost roughly half a pound (this is a lot for a twelve pound cat). The vet did an ultrasound, and showed me that Duck has inflammatory bowel disease. His intestinal walls had thickened in some areas, indicating that immune cells are coalescing. The doctor then informed me that Duck would need to be on corticosteroids and chemotherapy for the rest of his life.

I reminded the vet that I foster, and suppressing Duck’s immune system long-term seemed like a poor choice, given that I invite cat disease into my home with every litter I take. “You’ll just have to cross your fingers with that, I guess,” he told me. I asked what long-term effects the chemo might have, and he said that there was an office cat who had been on chemo for seven years and he was just fine. The vet then gave Duck a steroid shot and sent me home with the prednisone and chemo meds.

I left with the medication, and burst into tears on the way home. The vet nurses told me that I would have to give Duck the chemo meds while wearing gloves – that the medicine wasn’t safe for me to touch. I thought about the idea that, if the medicine isn’t safe for me to touch, how could it be safe for my two-year-old baby to take? I always knew he could die young, but to die of the effects of chemo? I then realized that the principles I wanted to convey in my patient advocacy practice apply here. I sought a second opinion with a holistic vet.

This vet, along with several of my cat harboring friends, thought the suggested protocol was extreme. The holistic vet offered me supplements, along with a vaccine detox (unlike in human medicine, veterinary medicine recognizes adverse reactions to vaccines) to try first. Luckily, Duck likes the supplements, and started eating as soon as the steroids wore off.

He hasn’t had any recurrence of the diarrhea yet. I’m not taking steroids off the table entirely, but I am never going to do the chemo. I decided (after reading about how the outcomes of most cancers do not improve despite treatment) that I wouldn’t treat cancer in myself or my cats (save for easily treated versions like early stage melanoma). No, I cannot justify the use of chemo in any circumstance.

In other news, I picked up a foster kitten about a week ago. Meet Mozzie:

When he sits, Mozzie has a heart on his left flank and a broken heart on his right flank. When he stands up, the markings are less obvious – they’re more roundish blobs.

Mozzie was shy and ill when I first got him. He hid behind the toilet and hissed when we went in to visit. It a matter of days, Mozzie cracked – he loves us now, and turns out to be the most affectionate kitten. Mozzie loves to be held, he loves to purr, and he loves to simply be near his people.

In addition to all the above events, this month I got wind that yet another of my friends is expecting. I’ll reveal who in a few months – she wasn’t telling anyone at first, but decided a few days later that maybe she did want to tell. I’ve informed a few close friends, but I somehow don’t feel right announcing it here just yet. I am knitting and crocheting baby stuff like crazy now. I am squeezing in a few other things, but not a whole lot. I fear Michael may never get his socks!

Well, maybe I’ll work on them when we go on the Caribbean cruise we also planned this month. More details about that in the future.

Told you the world changed this month!

The only thing that didn’t change is that I’ve kept knitting. I finished K’s winter garments:

But I forgot to photograph the mittens before I mailed them! Oops. I’m going to visit her and Dr B in May, so I’ll try to get a shot then. Maybe I can a picture of the socks I made her for Christmas as well.

I’m also almost done with Dr R’s giant socks. I’ll see if I can get a shot if him wearing them on Monday (because I should totally have them finished – they are worsted weight socks, after all…). I’m also making progress on Jen’s crayon blanket. Her little girl is due in June, so I don’t have a whole lot of time left.

Well, I have a lot of work to do. My next priority is talking about the autoimmune diseases conference, so be on the lookout!

Something Has Changed Within Me

I returned my kittens today. I’m hoping this is just a short break, but I’ve learned that sometimes my breaks are longer than I’d like. The shelter has plenty of kittens in need of fostering right now, so I have hope that as soon as I am ready, there will be more of them.

The reason I am not taking more kittens right now is that I have a medical procedure coming up soon. On Thursday, I’m having a probe inserted for an Impedance Study. The idea is that they are going to measure reflux from my stomach into my esophagus (because my cardiologist believes that my chest pain is esophageal rather than cardiac). Originally, I didn’t want to do any of the gastroenterology tests. They are all invasive to some degree, two of them involve going back to eating gluten, and two of them involve general anesthesia (although they can be done together). My concern is two-fold: gluten is now thought to cause nervous system damage, and general anesthesia isn’t recommended unless absolutely necessary for someone who has nervous system damage, particularly if it’s the autonomic nervous system. I was just officially diagnosed with an autonomic nervous system disorder, so it just seems too dangerous to do these tests.

Despite me telling the scheduling people at the hospital that I wanted to put these tests on hold until some of my other studies have been completed, they started calling me at least every other day to request I schedule the tests. The first time, they caught me home alone and managed to convince me to at least schedule the Impedance Study. I justified it to myself (after the fact) by pointing out that doing at least one of these tests might prove to the cardiologist that my chest pain really isn’t esophageal in origin. This one only involves a numbing spray in my nose and 24 hours of wearing a probe (which I don’t imagine will be comfortable). If I am honest, I still have reservations about doing even this one. I’ve never complained of heart-burn, so why would this even be a consideration? I told them that removing gluten has solved most of my digestive issues. So why should I subject myself to this?

I have no good answer. I have some answers, but they definitely point to a weak character. I’m more and more certain by the day that I know exactly what is wrong with me, and now I’m really just looking for proof. There is a part of me that wants to be open to the idea that I am wrong, though, because if I can’t be talked out of the idea that something is wrong with me, well, that’s the definition of hypochondria. On the other hand, I’ve been told by more and more people (except for medical doctors) that if I think something’s wrong, and if I think the doctors have been missing something, then I shouldn’t stop until someone sees what I see, or can at least explain to me why I’m wrong in a way that satisfies me. It’s just that I grew up in a world in which the doctor is in a paternal role, and I feel like a naughty child challenging the doctor. I practically hear the parent voice in my head, “Don’t you back-sass me!”

On some level, I’ve been a bit demoralized, too. The sleep doctor scheduled several tests for me, including  an actigraph and a sleep study. He believes, however, that I am really suffering from a form of bipolar disorder that manifests as a sleep disorder. Here’s the thing – I have insomnia when I am taking too much thyroid hormone (defined by my heart racing all the time), and I have hypersomnia when I am hypothyroid (the only condition in which my heart stops the incessant racing). I don’t think he believes that there is a direct causal relationship. To reduce what I am going through to what is essentially a psychiatric diagnosis brings me right back to the “you’re not sick, it’s in your head” place. I think the actigraph is stupid, but it just involves wearing what amounts to a prison monitor an expensive watch for two weeks. The sleep study upsets me though, because they are taking me out of my regular environment and trying to make me sleep during specific hours, during which I may or may not be able to actually do so. They are going to stick electrodes all over me and measure brain waves while I (theoretically) sleep. They are also checking for sleep apnea (I’ve never even been accused of snoring, let alone waking up gasping for air…). Tell me, what is scientific about changing a person’s circumstances entirely and measuring what you find?

Throughout all of this, I’ve taken to trying to understand the current state of our medical system. I’m trying not to become a conspiracy theorist (although my husband might tell you that I am overly suspicious), but I have taken the time to read other people’s views of what is right an what is wrong with our medical system. Here are my thoughts in list form (and in no particular order):

• On the physician level, I think most doctors at least go into the field with a general desire to help people.
• The training that (specifically) doctors get, may not be coming from the best place. Med schools are funded by pharmaceutical companies, who essentially want to train these people to prescribe drugs.
• The pharmaceutical companies have very little interest in cures. They keep making money if you keep needing their drugs. Sometimes, you need drugs to counteract the side effects of other drugs you are taking. And usually the original drug is prescribed before any other diet or lifestyle changes that could actually reverse disease are even attempted.
• A lot of pharmaceuticals cause more harm than good. Avandia. Darvocet. Yaz. I’ve been on all these drugs. Two have been removed from the market, and one is under investigation for serious side effects. Drugs have to be proved dangerous to be removed from the market, rather than proved to be safe in the long-term before being released to the market. Pharmaceutical companies often suppress research that suggests their drugs are dangerous or ineffective.
• On the other hand, some pharmaceuticals really do save lives. Antibiotics, used conservatively, have certainly been helpful. Their overuse, however, has created untreatable infections.
• Vaccines are highly touted, even mandated, but there is little regard for the fact that some people cannot tolerate them. In addition, vaccines contain aluminum and mercury, known neurotoxins. The only reason for this consequences-be-damned push is profit. I’m not sure that I think vaccines do more harm than good, but I do believe that they should be a choice and that they should be used more judiciously.
• Doctors are paid for prescribing more procedures and drugs, rather than for their time (there is an office visit fee, but it is a much smaller portion of their income). Maybe that’s why they prescribe what I consider “stupid” tests?
• The average doctor interrupts the patient in 14 seconds. That suggests to me that the “average doctor” is more interested in getting you out the door than in figuring out what is really wrong with you.
• Many whole body diseases are missed or even dismissed because of all the specialization in medicine. The over-reliance on technology also gets in the way of a good old-fashioned diagnosis.
• I don’t think patients are given enough information to be able to make true “informed consent.” For example, did you know that birth control pills raise the cortisol levels in your body similarly to how steroids do? I didn’t either until I noticed that LabCorps listed this under the limitations of their blood test for cortisol. Long-term steroid use has bad consequences we should be aware of (especially immune consequences). Synthroid’s literature says that you should not use their product if you have an uncorrected adrenal problem, but no doctor (not even an endocrinologist) has ever mentioned this bit to me. I’m honestly not sure if most of them know. The contraindications show up on page one of the literature, starting near the bottom left (the font is microscopic, so zoom in). In this section, they mention that doctors need to pay attention to more than just TSH levels (T4 and T3, specifically), but only recently has a medical practitioner done this for me. Plus, wow, they discuss the relationship of thyroid hormone and heart disease a lot. Also, something I had to find out on my own.

All the above thoughts led me to feel a lot less trusting of the system. I found that I feel like one of a herd of cattle in the waiting room, especially at the hospital. I feel like no one is going to give me more than a cursory glance unless I start complaining – loudly. Even when someone is compelled to look again, I feel like the treatments and tests are ordered dispassionately, without regard to how they might affect me as a person, with all my quirks and unique history.

As I’ve spoken about these things to other people, I’ve started to feel angry. I started to think, “How dare any doctor suggest this is in my head after spending only a few minutes with me. They don’t know me. They can’t possibly know that.” I started to feel like I need to say “no” to more of these tests – the risks may just be theoretical for the prescribing doctors, but they are very real to me. I need to learn to feel less guilty when I find more relief with alternative medicine than with the pharmaceutical-driven one (many medical doctors and occasional strangers try to derisively tell me that the alternative care is at best placebo, when I can say for certain that it isn’t). I’m more educated than most, and I need to act like it.

I just feel it’s tough to be assertive when you’re trying to gain the cooperation of someone who holds the hammer on whether you will get the medicine or diagnosis you need. Being labeled “non-compliant” is devastating for someone with chronic disease, and a doctor can make your life very difficult by labeling you that way. They can tell you that you don’t feel better because you didn’t listen to their advice. They can deny more testing on that basis.

It’s a delicate balance, for sure, but I’m feeling quite motivated these days to figure it out. I’m just really tired of being sick.

Knitting Break

I need a break from my life right now. My health is my life, and I just need some time to not think about it. Easier said than done, I’m aware, but I want more in my life than doctors appointments and disease/treatment research.

For several weeks now, I’ve had foster kittens. I haven’t had the energy to post about them, and Michael has been involved in most of their care, but they’ve been here. In order, we have Caylus, Collete, Demi, and Raven.

The kittens have been really healthy, and all of them are about as sweet and affectionate as you could want.

I’ve also done some knitting. I have several projects with deadlines, so I’ve been focused on them. First, I made a hat and mittens for my friend Vickie’s expected baby. I might make some booties to go with these – I haven’t decided yet. I want something the baby can wear right out of the hospital first, then I’ll see if I can make something that she can wear as she grows a bit.

I’m also working on a “yarn shirt” for my niece Alexis to wear at Christmas. A few years ago, when I was living in San Francisco, I taught Alexis to knit. We later went walking past a yarn store, and Alexis got incredibly excited when she saw a sweater in the window – “That’s a yarn shirt!” We managed to get together again later on, and Alexis informed me that I need to knit her a sweater. I love that she wanted something made by me, so I’ve finally gotten on it. I intend to give it to her as a Christmas present. I’m also going to make a sweater for her brother, but that hasn’t been started yet.

The pattern is a DROPS pattern, labeled s15-7. I’m knitting it in O-wool Balance, pink and green. I’ve made a few modifications, most notably that I am knitting it in stockinette rather than reverse stockinette. I’ve never really liked the reverse stockinette stitch as the public side of a garment, so there you have it. I’m hoping the sweater comes out a little big so she can wear it for a relatively long time, but we’ll just have to see.

I don’t have the focus to knit as much as I’d like, and I had to abandon a shawl I was designing, but I’ll get back to it. At least I hope.

Fragile Things

I’ll get right to it – I’ve been unwell. It’s kind of my fault, but not entirely. Here’s what happened:

At the end of April, I got a group of five bottle-feeders. They came to me with names of bathroom supplies, like plunger and toothbrush. Michael and I renamed them as characters from the musical “Guys and Dolls.” We have Rusty, Nathan, Adelaide, Benny and Sky. Except for a brief bout with an eye infection and maybe some minor cold symptoms, they have been in good health.

Not long after I took the “Guys and Dolls” kittens, the shelter called and asked if I would take a mom and kittens. They said she had a few surrogate kittens, and they were worried she’d dry up before the kittens were done nursing. They wanted to place the kittens in a home where the foster parent could bottle-feed if necessary. The other kittens were weaning at the time, so I said I’d take them, too.

When I got to the shelter, I learned that the mom cat actually had two more litters mixed in with hers for a total of eight kittens. Well, no wonder they worried she’d go dry – there were too many kittens. We named the kittens Pillow (because the mom, Cinnamon, used him as such), Gingham, Velvet, Linen, Lester (Dr B named him) Esther, Cotton and Satin.

 (Click to enlarge)

When they got home, I learned that Cinnamon just wasn’t really into the whole eating thing. I had to hand feed her for the first few days, but after some time she started to eat on her own, so long as it was Fancy Feast and not something good for her like Wellness. I didn’t care what she ate, so long as she just ate food: she did have eight kittens to feed, after all. I suspect she had a cold that she was hiding (as cats are wont to do), because within a few days several of the kittens developed eye infections and cold symptoms. As some of them began to lose weight, I began supplemental feeding. I took some of the healthier kittens with me to run errands while mom tended to the sicker ones. It didn’t really matter.

First Pillow died. He started to lose weight, and then later when I would visit the kittens, I’d find his nose would be plugged closed with snot. I started thinking about taking him in for euthanasia, but then I found him cold and stiff a few hours later. Nature made the decision for me. A few days later I took Linen and Gingham into the shelter because I thought Linen needed to be put down (for the same cold that Pillow had) and I wanted them to look at Gingham’s eye. The shelter agreed about Linen. They also put Gingham down because the eye that had swollen and gotten crusted shut had actually ruptured. She was too small to do surgery to remove the eye, and the condition is very painful. Two days later, Velvet met the same fate as Pillow and Linen. It was just so sad.

In light of what was happening with the kittens, I began thinking about my own situation. I had gotten tired of taking over 30 pills a day, so I started skipping doses. One morning, I woke up and felt a really strong resentment toward all the pills, so I took the day off. The resentful feeling lasted a few more days, so I just stopped taking them all together. I kept on the thyroid meds, but that was pretty much it. It’s just that with all the kittens dying, I thought about Nature’s wisdom. There were eight kittens living in the exact same circumstances. Four got really sick, and four did not. The ones who died were just weak, and interfering on my part would only have prolonged the suffering – in fact, it did prolong poor Pillow’s suffering. I thought about how I was taking that large number of prescriptions and supplements, and that my energy level was not improving. I want to be in such a position that I can go back to school and get a job. Staying home for an extended time is nice sometimes, but not when you don’t have the option to stop doing it. I felt the reward just wasn’t big enough for all the work I was putting in. So I quit.

A week later, I was definitely feeling the effects of my decision. Every day I got a little more fatigued, until finally getting out of bed was a real struggle. I mentioned that I had stopped the supplements to one of the girls at the front desk at Dr B’s practice, and she encouraged me to talk to him about that. She agreed that the number of pills I took was unwieldy, but maybe I should see what was strictly necessary and stick to that. After thinking it through, I decided that it was indeed best to be up front with the doctor and let him know what happened. I wasn’t prepared for what happened after.

Dr B got a little upset that I had stopped. Not because I wouldn’t be purchasing supplements from his office, as some who criticized his chiropractic practice had suggested. He was upset because he felt that we had gotten into a situation where he cared about my outcome more than I did. After a prolonged period of disagreement and a small “fight” that I would really rather not detail, I learned that Dr B was a much better doctor than I had realized. I mean, yes, I realized that his style was very different from other doctors I had seen, and I kept seeing him for that reason. He wasn’t content to say, “Well, I can’t find anything wrong, so you’re fine.” If I wasn’t well, then he wanted to keep looking for the reason. But what I learned from the situation is that he actually cares – he wasn’t just checking off boxes so he could say he did his job regardless of the outcome. I learned that he doesn’t stop thinking about me when I leave the office; in fact, he said that he thinks about my situation every day. Even though I wanted to give up, he didn’t want to. In my experience, every other doctor I’ve ever had was ready to move on long before I was.

To be honest, I have no reasons of my own to continue treating my chronic fatigue. I have lost hope that I will have a future in which I won’t be tethered to pills and doctor’s appointments. I am pretty sure that I will never be able to stick to a reasonable sleep schedule in which I get up in the morning and sleep at night. I’ll never be able to hold a job because my health just isn’t reliable. I can’t enjoy a vacation because I have to sleep so much. It takes a lot of caffeine to make it through a day. When the caffeine doesn’t work, I have to move on to pseudoephedrine. I felt like that was Nature’s way of telling me that I am just not viable, like all the kittens who died recently.

I spoke to a few friends during my crisis, and one was able to give me a reason not to quit treating my condition. She pointed out that despite what I might hope for, this condition might not kill me. In fact, it may just disable me to the point where I lose my agency, my ability to make decisions for myself. I value that, at least, and I am moving toward getting back on the track I was on, with all 30+ pills/day. I won’t lie – it’s hard to motivate myself to keep trying. My reserves are gone. I’ve been fighting fatigue for over ten years, and all I’ve gotten is worse. It’s at a critical point now, and I’m not sure it will ever improve. Somehow, between my friend’s reminder that I could find myself seriously disabled and my doctor’s personal interest in the situation (I really hate to disappoint people whom I admire), that’s going to have to get me through.

While I was off the supplements, some pretty scary symptoms emerged. At first, I stopped being able to feel the right side of my face, just like after the stroke-like event I had in February. It’s like when you’ve been to the dentist and had a filling – I can tell that there is something touching me from the pressure, but my ability to really “feel” it is gone. In a few days, the numbness started spreading in to my ear, and I actually started having hearing trouble, like I had my hand over my ears. The numbness also started to spread to the left side of my face.

Even after I restarted the supplements, new symptoms emerged. I went out for coffee with a friend, and when I went to the bathroom, I noticed I had swelling around my neck. Upon closer inspection, I realized that it was swollen in the distinct shape of my thyroid gland. I wasn’t too terribly worried about it, but to be fair, I’ve lost the ability to judge what is a serious issue and what isn’t. I err on the side of dismissing things, largely because I don’t want to be seen as a hypochondriac. I read a book (Life Disrupted) in which the author mentioned that people who have chronic disease tend to ignore what could be serious symptoms, in part because they are so used to being sick. She said that it’s important to try to step outside yourself and imagine how a healthy person would see the situation – I’ve tried to take that to heart. When I showed the swollen thyroid to my friend and she freaked out, I considered the bit of wisdom I had obtained from the book and listened to her. I called Dr B and the allopathic nurse practitioner (C) that day.

The nurse practitioner took blood samples and scheduled me for an ultrasound. She and Dr B were both under the impression that this was just a flare-up of the Hashimoto’s disease, and the blood tests would show abnormal thyroid hormone levels as well as an increase in antibodies. Well, the tests all came back normal. In fact, the antibodies were lower than they have been most of my life (they were 40% of what they were when I was checked four years after my diagnosis).  The ultrasound revealed a small nodule, but it was only concerning enough to C to make her want to monitor it yearly. Again, major symptoms with no explanation. It’s infuriating. Honestly, I kind of wish she said I had cancer so that we could do something about it. Not that I want to have cancer, I just want an answer. I want to be able to do something about this.

I have managed to get some knitting done since my last blog post. Admittedly, it’s hard to focus now, and the work is intermittent, but it happens. I finished a few projects.

Gwendolyn:

 

I made her from a large cone of angora fiber I got from Art Fibers many years ago, before I moved from San Francisco. The thing is, she sheds. Pink bunny fur all over everything. I still love this shawl, though, and I deal with the fur. Just like a kitten.

I also cast on and finished these fingerless gloves for my sister-in-law.

I made them from some merino/tencel yarn I spun in 2008. Alicia really liked the yarn, and who better to give it to?

I’m also designing a shawl. I don’t have pictures of it yet because I want to have some people test knit the pattern. I plan on working on it when I have focus, but charting lace is kind of fiddly. My version of the shawl is going to be a wedding ring shawl. It’s made out of 1-ply cobweb weight yarn. The idea is that the knitting is delicate enough to pull the whole shawl through a wedding ring. I will try to have at least teaser pictures soon.

That’s what I’ve got for now. I can’t promise when I’ll update again, but I will. I have to take Nathan and Rusty back to the shelter today because they just made weight. I need to unload kittens. I suspect that I will have to take another long break from fostering because of my health, but we’ll see. I hope my condition doesn’t take away everything…

A Weekend Vacation

Michael and I are in San Francisco again. It’s a relatively short trip (3 nights) because I wasn’t sure how I’d be feeling by this point. I’ll just start with the punchline – I’m feeling good again. I’m still looking at this with cautious optimism because I’ve had so many false starts before, but I think it might be different this time.

When I went to Burbank last week, I learned that I had a massive infection. I’ll quantify it for you, like H did for me. The non-cognitive biofeedback machine gives a measure of your response to certain stressors in arbitrary units – an index. A healthy person will respond with a reading of about 1000, and a person who has an acute condition (in this case we’ll refer to viral stressors, since that is my exact problem) will read about 2000. H said that she will see a reading of about 6000 in someone who has had a long-term infection. H sees big infections all the time, so when she told me mine was big, it meant something – I measured at 15,000 on the viral stress response. Here’s the kicker – I had blood tests drawn just two weeks before seeing H, and they showed barely any immune response to the viral stressor.

I brought this information to Dr B, and I did some thinking about this on my own. I mean, why did no one catch it if I had such a massive infection? Not even the allopathic physicians caught this one. H told me that my immune system was just ignoring the infection. I guess it was so overwhelmed that it didn’t even try. If that’s the case, then no matter what virus I have, I’m not making antibodies, so none would show up on a blood test (doctors test for the presence of a virus by measuring the antibodies to that virus in your blood stream). I can buy that. The reason I buy that is this: H gave me a homeopathic medicine to support the immune system’s response to a viral load (Dr B also has a similar product, but without the diagnostic, there was no way he could have known to give it to me).  After I started taking the medicine, I started to feel worse. I know this seems bad, but it’s actually good – my body is finally responding to the infection, trying to fight it off. My throat has been an angry shade of purple for about a week now, and it’s been swollen to the point where I can barely swallow. I’ve had sinus congestion and fevers like no one’s business. As of yesterday, it seems to be clearing up a bit. That may, however, be deceptive – I had to take pseudoephedrine to make it through the flight because the congestion in my ears got downright unbearable when the plane took off and landed, so it may just be the drug making the congestion go away. I plan to continue taking it through my weekend in SF, since there are things I want to get done here, and I don’t have the time to just rest (although I am making sure to pay attention to my limits).

We still have to deal with the hypoglycemia, but I think that the virus can account for the worst of it. Still, this is major progress.

Before I left for the trip, I had to drop the kittens off at the shelter. I am getting them back when I come home on Monday, but I made sure to photograph them just in case. Alas, I cannot post the pictures because the wireless internet connection at the hotel is poor. I should be able to connect a wired connection, but the computer doesn’t recognize it. This sucks.

In any case, I will blog about the trip and post my pictures when I get home. I guess what matters now is that for the first time in a long time, I am up for this. What a relief!

A Little Faith

This week has been brutal, no doubt about it. I have a lot more going on than I normally do, and a little bit of Murphy’s law kicked in while I’ve been trying to juggle it all.

On Monday I went out to run errands, despite the fact that I had been up since 2:30 in the morning. I had appointments to make later in the week, and since I was traveling on Thursday, I needed to get out at the first opportunity.  The day went as well as could be expected, and when I got home around 3:00, I wanted to collapse. Of course, since I had babies at home, it wasn’t an option – I had to feed the babies first. Inky (the little black one), Misti (the grey one) and Muffin (the black and white one) all came out for their bottle. After feeding the first three kittens I found Bear (the bigger black one) sleeping in his carrier. That’s pretty common for a kitten to sleep so hard he misses the fact that everyone else is screaming for the bottle. I woke Bear up, and he nursed for a moment before giving up. I re-fed everyone else, then realized that Bear was sleeping in my lap. Concerned, I placed him on the floor and tried to get him to walk – he was ataxic (medical for “walking like he’s drunk”). I immediately put Bear in the car and rushed him to the shelter.

The shelter staff took Bear into the back to begin rescue procedures. As I was waiting for them to update me, my cell phone rang. Normally I don’t take phone calls from anyone other than Michael when I’m busy, but an instinct told me to pick up the phone this time. The caller was a casual friend of mine who happened to adopt Donald from the last litter of foster kittens. I didn’t blog about these kittens, I realized. It was in November or December, and mostly Michael was caring for them since I really couldn’t.

These are Donald, Goofy, Ariel, and Jasmine. Poor Donald was really sick, but he pulled through and became the sweetest little guy! Goofy died, though. He had a case of megacolon – his intestines stopped working and he got so constipated that he couldn’t be unblocked and they had to put him down. It was incredibly sad.

Back to the present: My friend had just moved into a new place over the weekend, so Donald was already a little scared. When the pizza guy came by to deliver dinner, Donald snuck out of the house. On Monday, a little girl brought Donald back to his home, but Donald was in bad shape. The little girl witnessed one of the neighborhood boys stomping on Donald. My friend was in a panic, not sure what to do. I instructed her to take him to the emergency vet. When a cat is injured like that, even if you can’t find broken bones, it’s important to make sure there’s no internal bleeding or something. I also advised her to call the police – that kind of animal abuse is a crime. Since I was at the shelter, I had an animal control officer set up a case for her. The bottom line is that Donald is ok now, but the little girl’s mother made her change her story to protect the boy who hurt the cat, so it appears there will be nothing done about the abuse. Great, that mother just taught her daughter several very bad lessons – it’s ok to hurt animals, don’t report crimes, and lie when questioned by the authorities. I hate people.

As for Bear: the shelter kept him overnight on IV fluids. They returned him to me the next day, telling me I just hadn’t fed him often enough. I try not to take comments like that personally. First of all, I’ve been doing this for a long time – I know how often to feed kittens. It was his regularly scheduled feeding time, and the other kittens were just fine. Second, when I told the vet how many kittens I’ve fostered (almost 250 now), she said I’d seen far more of them than she had. The vet was young, probably fresh from vet school. She really had no idea what she was talking about. I decided that I would just monitor him more closely for awhile. He’s been fine since the incident, so I just chalked it up to the fact that sometimes kittens crash and even die for completely unknown reasons.

As of right now, the kittens are great! They have started eating just a little bit of wet food mixed with milk. They are still eating the dry food as well. They use the litter box, and play just as I expect. Misti even made friends with Duck.

Duck was afraid of the kittens when they couldn’t really get around, but now that they are no longer infants, Duck thinks they make great playmates.

I’m plugging along on my knitting WIPs. I finished one of Robert’s boot socks with the intention of sending it off to him to be fitted. I later decided that I would like to have the socks together so I can just make them match, and if I have to rip them back and re-knit them I’ll count it as another project for my goal of finishing up the WIPs.

I’m pretty happy with the way the first one turned out.

I know a lot of people have been waiting for the health update, so here it is:

On Thursday, I got on a plane for Burbank to see a woman (we’ll call her H – she isn’t a doctor, but she has a bachelor’s degree in biology) who specializes in non-cognitive biofeedback. I’ll be the first to admit, this diagnostic method seems a little… exotic. In theory, this machine can read meridians in the body and tell where your body is stressed. I went into it with a healthy dose of skepticism, but I thought that since no other diagnostics were really telling me anything (the antibody tests Dr B ordered came back negative, but there were other things I’ll get to in a minute), well, I had nothing to lose.

One of the first things the machine told her was that I was severely hypoglycemic. I already knew that – the tests that Dr B ran showed that my hemoglobin A1c levels (a measure of your average blood sugar over the long-term) were too low. Also, when I got out of the car at the airport, I wasn’t feeling right. Although I didn’t have the right symptoms for hypoglycemia (sweating, dizziness, trembling – all adrenal responses), I immediately got out the blood glucose meter and checked my blood sugar. The meter read 45, and it reads 15-20% high, which means that my real blood sugar was between 36-39. That fits the clinical definition of hypoglycemia. This was the most severe hypoglycemic event I’ve ever had, and I wasn’t sure I’d be able to correct it well enough to fly. Fortunately, I had the foresight to bring candy canes left over from Christmas with me, and they worked. Crisis averted. The scary part is, other than just a vague sense that something was wrong, I had no symptoms. If my blood sugar gets too low and I am unaware, I could have seizures or even go into shock or a coma. That’s just such bad news.

The question is not whether I am hypoglycemic or not, it’s why am I hypoglycemic? The first thing the machine told H is that I have a massive infection. I’ll go more into detail about it later this week, after I speak with Dr B about the results. Overwhelming infection can most definitely cause hypoglycemia – in fact, that’s the most common cause I’ve seen for the death in my foster kittens (infection culminating in irreversible hypoglycemia). The next thing that came up is that I’ve had a large pesticide exposure. That one baffles me – mostly, I eat organic food now, and I wash my fruits and veggies before eating. Maybe it’s the flea medication I’ve used on foster kittens when I lived in San Francisco? She also noted that I had a high insulin load, but she attributes it to insulin resistance (which I am still not sure about – I have been on a diet that should reduce the resistance, and a lot of the supplements I am on also have that effect). There were other things that came up, but we aren’t dealing with them right now. H says that if we change too many things at once, we could do more harm than good.

I’ve invested in books about treating hypoglycemia, and after reading them, I’m sure that this is the cause of my fatigue. I’m still not sure of all of the reasons for the hypoglycemia, and there may be many. Still, this is MAJOR progress, and I’m feeling optimistic that it can be sorted out now. There is a very real risk that I might not survive long enough to get better, but if I’ve lived this long with an infection of the magnitude H describes, well, I must be a sturdy sort.

I also learned from reading the books (Hypoglycemia for Dummies and a textbook written in the UK called Hypoglycaemia in Clinical Diabetes (Practical Diabetes)) that not all doctors believe that hypoglycemia can exist in patients who are not taking insulin. Really? The textbook repeatedly states that hypoglycemia in non-diabetics is rare and practically dismisses the possibility, but I attribute that to the fact that the book specifically explores the condition in diabetic patients (I got the book because I wanted to understand the mechanisms of hypoglycemia, and it does do that). According to Hypoglycemia for Dummies, even the doctors who believe hypoglycemia can exist in non-diabetic patients don’t believe that diet has an effect on the condition. Again, really? I guess it explains why no one ever talked to me about low blood sugar before. Every doctor I’ve ever seen has been focused on my family history of diabetes (both types) and has consequently been worried about high blood sugar (which I have never demonstrated, but I do have signs of high insulin). It’s the same as the blood pressure – they get all over my husband for being mildly hypertensive, but no one ever bats an eye at the fact that my blood pressure is too low. I’m just going to put this out there for medical professionals to ponder: “There is a functional range out there, people. With a high and a low. Both ends need to be attended to.”

This week, in addition to preparing to travel to San Francisco, I am going to read as much as I can about hypoglycemia and I’m going to discuss what I’ve learned from the books and from H with my doctors. By Wednesday I should have the information I need to discuss what I’ve learned with you in much better detail. No matter what, I’ll check in so those of you following the health crisis know what’s happening.

Unexpected Breakthroughs

I’ve had quite a few surprises since I last posted, most of them good, but a few not so much.

The kittens have gotten to the point where they can use a litter box, if they are so inclined. I planned to put them in their “crib” on Saturday (the crib is a large plastic bin with wheels – it’s bigger than the the cat carrier, but it still keeps the little dudes contained and out of trouble) and introduce a litter box. When I woke up, Michael had already moved the kittens to the crib. Good deal. The little girls have sprouted their milk teeth as well, and have shown an interest in eating softened Baby Cat kitten food. They are mostly on the bottle at this point, but it’s nice to see them try food without being forced. At the first feeding since the kittens were moved to the crib, I noticed one of the black boys (we’re calling the larger one Bear and the smaller one Inky) squatting in the litter box. “No way,” I thought, but when he moved, there was the clumped up cake of cat litter (corn based litter, for those who worry). The next morning I noticed a lot of little pee spots in the litter box, so it seems that they all know how to use it. What a great development! These are the easiest bottle-feeders I can recall having.

I’ve achieved my goal of finishing three WIPs to account for the sock I cast on. The good news is, I’m not feeling the itch to cast on a new project – in fact, I’ve been content to finish old ones. As part of my second wave of projects that must be completed before casting on a new one, I’ve made progress on Robert’s boot socks. I was planning to work on the hemp shopping bag as well, but I just wasn’t feeling the project, so I switched it out for the beach skirt that I am designing. The newly cast on socks are part of the three active projects as well. I am doing a lot of traveling, so it’s nice to have that small project to carry around.

I decided that the circle rug did indeed need a border after all. I figured that if I kept thinking about it and feeling guilty for not adding a border, then that meant it was needed. The border helped to soften the edge I left when joining the long strip.

I also finished the Everyday Tweed sweater. This is one of the less pleasant surprises of the week. I made a small size and I followed the pattern. I even made the slightly differing dye lots work with a bit of fancy color work. Still, the sweater didn’t come out right. Somehow, it’s too large around the neck and upper back – the fabric actually bunches up and folds over at the top. It looks nice, though, so maybe I’ll wear it around the house over another shirt on cold days. <sigh>

(the comic is “Rhymes with Orange”)

I also achieved another goal that wasn’t on my list, but it’s something I’ve been trying to achieve for about two years now. (click to enlarge)

I finally broke 200 in bowling! Sweet! My next bowling goal is to get a clean game.

I’ve saved the best for last – I think we’ve finally had a breakthrough in figuring out what is wrong with me. It’s kind of a long story, but I’ll tell it as concisely as possible.

Earlier this week I watched an old episode of Mystery Diagnosis that has been waiting around on my TiVo. Ever since the onset of my Chronic Fatigue Syndrome, I’ve tried to get as much information as possible about what could be wrong, both by actively researching my symptoms and by just putting myself in the way of information. The episode I watched was about a kid who kept having hypoglycemic episodes. His were far more severe than mine – he actually had to be hospitalized for his condition. It turned out that he has a genetic condition that causes his pancreas to produce a lot of insulin, regardless of how much he needed to deal with the sugar in his blood.

I thought about my symptoms, and after assembling the puzzle pieces, some things started to make sense. I had a strong reaction to the new supplement. My primary care physician thought it had to do with the ATP in the supplement (ATP is the currency your body uses to transfer energy). I guess that I had so very little ATP that the small amount in the supplement was overwhelming to my body. Well, then I had to wonder, why am I not making ATP? My chiropractic endocrinologist/nutritionist then began to suspect mitochondrial malfunction, and ordered tests for antibodies for that, and a few other things. Those have not come back yet, as far as I know. Working from his theory, I researched what else might cause mitochondrial malfunction. At some point it became obvious – how can the mitochondria produce energy if they aren’t getting the fuel needed to do their job?

I have three known conditions: Polycystic Ovary Syndrome (also known as PCOS, which is basically early type 2 diabetes: the patient is declared insulin resistant, but I am coming to suspect that insulin resistance may not be the only cause of the syndrome), Hashimoto’s disease (autoimmune low thyroid) and immune system malfunction (overactive, generally). Of these conditions, the one to look at is the PCOS. What if the syndrome is not caused by insulin resistance, but overproduction of insulin? What if I make too much insulin, just like the boy on Mystery Diagnosis, and when I eat, the blood sugar does not get into the cells like it should, and is instead whisked away into storage before I get the chance to use it. It would be like putting so much of your paycheck into savings that you have little to no spending money, to the point where you can’t even pay your bills. I’ve always had high triglycerides, which are your body’s way of storing excess blood sugar. It’s a form of bad cholesterol (sugar combined with some fatty acids).

I brought the idea to the chiropractic “endocrinologist” (I’m going to call him Dr. B), and he said that he had actually discussed that very same possibility with the chiropractic neurologist (Dr. A) the day before. There are several possible causes for the overproduction of insulin, but I only know of two: an insulin producing tumor (called an insulinoma) or a genetic predisposition to produce too much insulin.

Overproduction of insulin (also called hyperinsulinemia) would explain every single symptom I’ve had. The brain cannot store its own energy, so low blood sugar in the body means the brain isn’t getting enough fuel. A doctor on Mystery Diagnosis said that repeated and/or chronic hypoglycemia has the exact same effect on the brain as drowning and being revived repeatedly (because the brain doesn’t store oxygen either). That was the comment that led me to further explore the insulin problem.

I told Dr. B that I wanted to do an experiment. I said that I wanted to add complex carbohydrates to my diet (I’m supposed to be on a grain-free diet right now, per the neurologist, and this involves adding back grains) with protein to slow the absorption. The idea would be to monitor my blood sugar closely to ensure that I didn’t overdo it. I tried this experiment over the last four days (maybe three and a half – I didn’t wait for approval, I was really just telling him what I planned to do with the intention of stopping if he raised a compelling concern). On the first day, I started to sleep better (I now stay asleep rather than waking up repeatedly). On a later day, I started to feel actually refreshed after sleeping (for the longest time it was just like I lost consciousness for a few hours, and when I awoke I was just as tired as when I fell asleep). I’m still sleeping a lot, but I think that’s because I have an enormous energy debt to pay back to my body, and it will take time to do that.

The catch is, I don’t think I can keep this diet up forever. If I do, my triglycerides are likely to go back up, increasing my risk for heart disease. Dr. B is concerned that the carbohydrate load will stimulate even more insulin production, and if that happens, it will eventually become impossible to keep up with it. What I really need to do is find the cause of the high insulin load, and treat that. Depending on the cause, that can be tricky business, and it may mean surgery. But this is getting a little too far ahead – I haven’t confirmed that my (our?) suspicion about the insulin production is correct. It could just be really strong insulin resistance as well (the idea being that insulin tries to get the blood into the cells, but it can’t so it stores it instead. I’ll explain that further if it becomes the operating theory). I foresee a lot of testing in my future.

Pretty Little Things

Kittens make me happy. Not that this isn’t evident, given that I’ve been writing about the little buggers for something like three years now, but it’s just nice to rediscover something that makes me happy. I am in a complete relapse, save for the insanity, right now. I don’t sleep much at a time, and I don’t feel well. Since I am clear-headed, though, I accepted the shelter’s request that I take some new bottle babies.

The little black ones have a white tip on their tail!

These four kittens are pretty solid for bottle-feeders as they were only separated from their mother Monday morning. A well-meaning person trapped the kittens but didn’t get their mother. While I appreciate what the person was trying to do, trapping just the kittens is counter-productive. First of all, the kittens will fare worse without their natural mother. Sure, I have formula, but nothing beats mother’s milk. Second, now that the mother is without kittens, she will reach a reproductive state sooner and just create more kittens who will need to be rescued. It is always best if you can catch the whole family so that the mother can be spayed and the existing kittens will have the best chance at survival.

Still, I appreciate the opportunity to care for the tiny babies. I’ve really missed fostering. There is something wonderful about holding a warm kitten and convincing him that I am nice. I love the little click-purr the kittens make when they feel satisfied with a full tummy and a warm place to sleep. It’s even better when the kittens are healthy and I don’t have to bathe them at every feeding.

These kittens are as of yet unnamed – I am going to offer the opportunity to some friends, I think. If that doesn’t work out, then I will perhaps open up the naming to my readers! I’ll let you know.

Well, I’m off to admire the little ones while they sleep. We have another feeding in about three hours, and I need to squeeze in a nap, too. Yea, kittens!

If I try

Some good news – I’m having longer periods of time wherein I am myself. Not just a reflection of who I was. I need dietary supplements to stay that way, but I’m me. I’m ok. For just a little while at a time.

While I was sick (and just a little before) I made this:

I will try to reproduce it so I can write down the pattern. I have no idea what to call it, but it’s the last thing I made for a very long time. I wish I had gotten a picture of someone wearing it before I gave it away, but that’s the beauty of making something of my own design – in theory, I can reproduce it.

I also managed to acquire something beautiful that someone else made:

A pile of wonderful little kittens! Disregard the fact that I look like hell – I’ve been through a lot lately. The kittens are all gaining weight and making messes, just as they should. Two of them are under-socialized, but those are my favorite sort. Well, those and bottle-feeders, but I am taking what I can get right now.

It’s a start. I’m still hanging in there.

Hope

So, like I mentioned in my last post, I’ve been out a long time. Again. The short version of the story is that I’ve been very, very sick. Sicker than I’ve ever been. It hasn’t been pretty.

I was doing so well for just a few short weeks. I woke up on top of the world, and I could do anything. I accomplished so many things in a day – more than I imagined I ever would be able to manage.

But then.

Everything has been sliding downhill. At first it was just a recurrence of the chest pain and breathing issues. Then it was random bouts of depression, leaving me in tears while playing Free Cell. I got worse, needing more and more sleep every day. I’ve been plagued with a low-grade fever for many weeks now. At some point my primary care doctor referred me to a cardiologist because she thought I might have a heart problem (I do, a mitral valve prolapse). The stress from my fears about heart disease (we die young of heart disease in my family, as young as in the mid 30s) caused me to start having panic attacks. Then every muscle, joint, and bone in my body started to hurt. I now see a massage therapist, a mental health therapist, and 2 chiropractors on a regular basis. Yeah, good times.

Anxiety about the tests to determine the severity of the mitral valve problem has really wrecked me. I knew I had a problem at that point, and I knew that no matter what the tests showed, I was going to lose. The simple answer for a mitral valve problem is that you can take beta-blockers. The cardiologist said that it won’t make you live longer, and it would just lower your blood pressure so the chest pain wasn’t so bad or so frequent. I can’t take beta-blockers. I know this because my blood pressure is always very low. I have a hard time getting out of bed. The chiropractor who does my adjustments noted that I have orthostatic hypotension (a condition in which your blood pressure falls when you stand up).  If I take beta-blockers, I will be completely non-functional – I’m sure of it.

So the two remaining possible outcomes are bad for me. Either the tests come out clean and I just have to live with it, or there is a severe problem and I’ll have to have open heart surgery. Either way, I lose. I managed to get the tests back sooner than they told me (it was supposed to be a week, but I got the echocardiogram back in two days and the stress test back the very next day), and they were clean. Fabulous.

The clean bill of cardiac health didn’t stop me from becoming debilitated. At some point, I tried to give up. I decided that it didn’t matter what the diagnosis was, I would only be treating symptoms and not the cause of the disease. Every possible option I had was a condition in which they couldn’t treat the disease, only the symptoms. I didn’t want to put myself through any more tests that were just going to freak me out.

But somehow, I couldn’t stop looking for the answer. So help me, I can’t not know. I kept researching, and I came across what I feel in my gut is a good lead: dysautonomia. Basically, it’s a broad term for an imbalance of the autonomic (involuntary) nervous system. I read pages and pages of information about dysautonomic conditions, and I have to say, it really fits. The symptoms describe things that were diagnosed in my childhood and young-adulthood (TMJ, loose ligaments from what is likely a connective tissue disorder, IBS, insomnia) and things that have just started happening now (numbness on one side of my face, searing pain in my right shoulder when I brush it against my pillow as I roll over, panic attacks, extreme fatigue, orthostatic hypotension, chest pain, trouble breathing… etc.). I just need to find a good neurologist, and I suspect that my diagnosis will be confirmed.

I was not myself anymore. I didn’t recognize the person I’d become. I hadn’t fostered in two months. I had limited tolerance for my knitting and crochet. I could barely get off the sofa. It was really, really bad.

Earlier this week, I saw the chiropractor who deals with nutrition. He has been trying his best to fix me, but it’s kind of hard to do when the symptoms I’ve had are things that no one in the office has seen before. It seemed that all this started when my immune system got out of balance again, so he tried to push it the other direction. No dice. On Tuesday, he gave me things to help control the inflammation, leaving the immune system balance out of it. The most notable difference is that he added B12 supplements to my list. He also added a cream with several other B-vitamins in it.

On Wednesday, I did get the low-grade fever, but it was truly less bad than it had been. I also stopped feeling borderline-suicidal (I’m not actually planning to kill myself, so don’t worry, I just found myself sincerely wishing for death to take me soon). This may have been a mistake, but I called the shelter and asked for kittens. I pick them up Thursday afternoon! Michael will have to be responsible for them if the one day was a fluke, but I don’t think it will come to that. I actually feel better for the first time in two months. Not on-top-of-the-world better, but just functional. Like I could see my old self again. I thought I was gone forever.

I mentioned the B-vitamins for a reason. A lot of the research I’ve done suggests that people with a dysautonomic condition are helped with the addition of B-vitamins. It seems to get the nervous system under control somehow. I can’t figure out if the vitamin deficiency causes the problem or if the vitamins just treat it, but either way,  I think it’s working. It makes my self-diagnosis that much more likely. The problem with self-diagnosis (for me, at any rate) is that I just know enough to get myself into trouble. Hence the confirmation from a neurologist.

So, I’m hoping this works. I’m hoping I get better. And I’m really hoping that this is the sort of thing that goes away on its own, and not the degenerative disorder that is has the possibility of being. Bottom line – I now have hope.